Organized in 1988, the Sotos syndrome Support Association (SSSA) is made up of families, physicians, genetic counsellors, and health care agencies throughout the United States and the world. The SSSA is a non-profit organization which is incorporated in the state of Missouri and run completely by volunteers.
Our Mission is to provide:
- A social support environment for professionals and families of individuals affected by Sotos syndrome so they can meet, exchange ideas and help one another cope with the condition.
- An understanding of the condition through education.
- A newsletter for members to share ideas, articles, and inspirations.
- An annual meeting in which to meet, organize, and discuss association business.
- An annual conference for professionals and families to network and gain insight from experts in genetics, neurology, psychology, and education.
- An opportunity for professionals working with individuals affected by Sotos syndrome to collect data for research and to meet colleagues.